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Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

Torturous as yesterday’s post was to write, I had to do it. Thanks to everyone who managed to pluck up the courage to reply to the unrepliable with comments and e-mails.  Apologies to everyone who felt paralytic or overwhelmed (I think that’s all of us) but this was only ever going to be a very bumpy ride. Lifejacket is under the seat and there’s a barf bag in the seat pocket in front of you – let’s hope we don’t need them too often.

For the moment, the sun is actually beginning to emerge from behind the dark clouds for a change: we have found and are applying for a clinical trial at last!  The study sounds promising — the most promising of all the experimental drug trials we were able to find — and there is a study site in Montreal, which isn’t totally ideal, but it could be worse, it could be much farther from home.  It could be outside Canada.  I’m not sure how swift the enrolment process will be or how we are going to handle the financials or logistics, but I’m already feeling so much better and more hopeful just knowing that there is a plan underway at last.

It’s amazing how much difference a little glimmer of sunlight can make.  We are going to be doing something.  And it might actually work!!

Unfortunately, getting to this point has been excruciating and, as anyone who read yesterday’s post can attest, the process has forced me to face the grimmest realities.  Among them, and second in grimness only to confronting my own mortality, was the realization that our medical system completely fails in its support of patients with cancers that don’t respond to standard treatment.

The transition from a supportive, comprehensive cancer-care system to the bleak no-man’s-land of post-standard-treatment was so sudden and jarring that it took me a while to realize that I had in fact been left to my own defenses.  Apparently the system just isn’t designed to take you any further than approved drugs and standard treatments, so if you have to go the non-standard route, you have to navigate it yourself.

Meaning it is up to the patient to research and choose her own clinical trial.  The patient, who in the majority of cases does not have a medical degree.  The patient, who is reeling from the news that there are no more treatments for her.  The patient, who is probably grappling with gigantic questions like “Am I going to die?”  The patient, who hopefully speaks English fluently, knows her own medical history intimately and is handy with the Internet.

Aside from the basic impracticalities of this situation, it has the psychological effect of leaving the patient out in the cold.  It sends a message of hopelessness.  It says: your cancer is so bad, we’ve given up.

I believe I wasn’t totally abandoned only because I and my family reached out repeatedly for help to my oncologist, the hospital social worker, my amazing family doctor, a clinical trials nurse, and many, many other people.  I’m deeply grateful to all of them for their help, but I’m still stunned and alarmed at the totally unacceptable failure of a system I believed in and trusted with my life.

But enough about all that for now. Really, I can be all stunned and alarmed later.  Right now I just want to enjoy the sunshine.

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

It used to come mostly at night, but lately it’s had the audacity to creep in even in bright sunshine. I’ll be going about my business when I get a sudden flutter in my belly, a lump in my throat. Silent flashes of anxiety. Brief, lightning-clear moments of reckoning: My god, is this really happening to me? Something shifts. Everything around me takes on a slightly unreal aspect, becomes slightly less solid. Fear is on the threshold. Don’t think it, don’t let it in. Everything I see is coloured by it; it settles over every surface like a layer of poisonous dust. Everything I do and say, every move I make stirs it up, unsettles it, thickens the atmosphere with it so I can’t ignore it anymore.

Am I going to die?

Sometimes, by the time I am in bed at night, and the house is quiet, I can barely breathe. Please please make it stop take the cancer away that’s enough now please just let me have my body back my life back let me live…  I try to distract myself, push it down, meditate away from it. Then I let it come, cry, try not to go crazy. My husband holds me in his arms and kisses my hair and wipes my tears away with a corner of the duvet as the Ativan melts under my tongue. Slowly my breathing steadies.  My heart stops pounding so fast. I’m exhausted now and my body will sleep, its only true refuge from the fear.

But it will be back, again and again. No matter how good my good days.  No matter how angry my anger.  The fear keeps coming back.  Am I going to die?

How can it not come back?  How can anyone around me, or anyone who reads this blog, pretend they haven’t gone there in their heads, asked the same question? Let’s admit it. Let’s not pretend that we don’t occasionally get stopped in our raging, planning, hoping, fighting tracks by the thought that this cancer might just kill me, and much sooner than we’d ever imagined.

The thing is, it can feel like even admitting to the fear – admitting that I wonder if this is going to kill me (meaning kill me soon) – is somehow giving up. But I’m not giving up.  I’m not. I won’t, I promise.  I feel like I have to be very clear about that because the theory goes that if you get it in your head that this thing is going to beat you then it does and you die.

I’m not entirely convinced of the truth of that theory – and I certainly don’t think it’s fair to deny someone the right to confront their own fears of death on the basis that thinking about it makes it come true – but in case the people who love me believe it, I’m telling you all now: I’m not quitting.  There’s a difference between letting myself consider the possibility that I might die and calling it quits.

What I want is to face the fear and then send it back down into the reeking depths from which it comes.  But facing it is such a tall order!  When I admit to myself that yes, this cancer could kill me, the first thing I think of is how hard that would be on my husband, my mom, dad, brother, family, friends, and yes (insert knife into heart here) my little girl. Causing every single person I love pain and loss and sadness is just about the worst fate I can imagine. It makes me feel helplessness and sorrow on a level that is almost physically painful.

That’s the number one reason thinking about my own death sucks – because of how I imagine it would hurt the people I love.

I actually don’t think I’m afraid of death itself. Pain and suffering, yes (definitely, unequivocally.)  But death?  Everyone is going to die.  We know this.  We just can’t wrap our heads around it. It’s hard to be afraid of something you can’t wrap your head around. It’s just too big a concept, just too miraculous and natural and kind of peaceful to actually be scary in and of itself.

What is scary and awful is the idea of the departure gate: saying goodbye to everyone and everything I love.  And it’s less scary than it is just plain awful.  Especially if it’s preceded by suffering and making everyone around you watch helplessly, knowing that they’ll just endure a whole new kind of suffering when you eventually do die… Ugh. Now that’s torment.

So why think about it?  And why, for the love of god, torture everyone by writing about it?

Because it is unfortunately part of my reality now, and if I don’t think about it or talk and write about it, it will drive me crazy.  Like wandering around grocery stores in bare feet and pajamas crazy.  Like putting vegetable soup in the washing machine crazy.  Crazy crazy. Certifiable.

Trying to avoid thinking about it or talking about it just makes it worse.  It makes me feel more isolated, which in turn makes me feel more afraid.

So I’m for tackling this topic head-on and not side-stepping any harsh realities of my so-far untreatable extremely aggressive life-threatening jerkface cancer.  Which means that lately I’ve been saying out loud to the people closest to me “I’m afraid I’m going to die.”

These are not easy conversations to have, not only because it’s really frigging difficult to talk when we’re crying and blowing our noses so much, but also because there’s not a lot to say about it.  Of course we have all thought about it.  We don’t like to think about it, and we want to believe that I will recover and live a long, healthy life – which I plan to do – but the thought that I might die has crossed our minds, all of us.

I’m just asking that we let the fear come, look it in its beady little eyes as best we can, and allow ourselves to cry about it, acknowledge it, be angry about it – whatever – just as long as we don’t try to ignore it.

Somehow I believe I can make the idea of dying just a little less terrorizing if I let myself get familiar with it.  If I can do this I believe that fear won’t colour everything, that it won’t always be lurking and looming, and I might be able to slip out of its grip and move away from it, toward other thoughts. I might actually get to enjoy my life fully, and be completely engrossed in all the things about it that make me want to live it for a long, long time.

At the very least, when I’m with the people I love, fear shouldn’t be allowed to pull up a chair and sit at the table with us, scratching its belly and belching in our faces as we all try furiously to ignore it.  If it shows up we can say, “We see you.  You’re ugly and you stink.  Now get out of here.”

If we’re going to sometimes be afraid, at least we can be afraid together. I want for it to be okay to talk about death as just one of the possibilities because it is one of the possibilities and if I don’t face it, it’s going to make me crazy. It is.  But we can also spend a lot of time talking about the other possibilities too, like beating this thing, finding the unconventional treatment that actually works for unconventional me, and imagining together those happy days in the future when I bore everyone who comes within hearing range with the story that ends with the line “…and then the doctors said, We don’t know exactly what happened, but the cancer is just GONE.”

Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

If the seven stages of grieving are anything like the seven stages of getting spectacularly grim news about your cancer, then I’m right on schedule:  I am no longer drowning in despair or frozen in shock, but am awash in the turbulent waters of anger.

This is good because it turns out that the upward climb from the bottom of the abyss is steeper and slipperier than at first it looked, and I was starting to slide back down a bit into the darkness of fear and despair.

But then yesterday I got mad.  Figuring out what my next step in fighting this cancer is supposed to be has been incredibly difficult and intimidating and I was feeling frustrated, frightened and unshepherded as I tried to navigate the clinical trial quagmire. And then, just when I was on the verge of crumpling into a heap of hopelessness, my fear and frustration transmogrified into a clear, burning rage.  It was like a blinding spotlight aimed squarely at a system that seems ill-equipped to support a person facing this more-desperate-than-average cancer flummox, and at a disease that targets mothers, fathers, best friends, and daughters instead of just taking out monsters like child molesters and corrupt politicians.

To my surprise I found myself smashing my fist down on the kitchen counter.  I did this about five times.  Then I did it about ten more times.  It may have looked a little silly but it sure felt better than collapsing into tears and being overcome with fear and frustration.  

I suddenly understood why men kick things when they’re mad, especially things they have just stubbed their toes on. The fist-pounding made me feel less vulnerable, somehow stronger.  Also a tiny bit cro-magnon. And then it started to hurt, so I considered kicking in some drywall, mentally appraising all the walls in our house for smashibility, and wondering if we had an axe…

Next, I had several very clear premonitions of spending the afternoon with blood-soaked towels tied around my limbs while waiting to get stitched up in emerg. Maybe the axe is not such a good option for me.

That’s when I remembered the “Rage Box” that my friend Karen made me.  It is a cardboard box in the garage filled with old chipped cups wrapped in newspaper.  The instructions read as follows:

1) Place in an area where things that break can be thrown. Preferably somewhere that you won’t have to clean up because who the hell wants to do that?

2) Start to feel the rage… run to box, grab a mug, throw against the floor, SCREAM!

3) Repeat as often as necessary.

4) Call when you need a refill.

I smashed everything in the box out in our back laneway (but did not scream so as to avoid neighbours calling police.)  I smashed some of them twice if they still looked smashable after the first smash. And my god it felt good.  I have already requested a refill for the rage box.

Look out cancer, I’ve just discovered rage, and I like it.

 

When I was first diagnosed with breast cancer in May of 2016 at 34 years old, I felt isolated and afraid. My treatments were spent in a room full of women much older than me, the constant stares and whispers as I walked past that I was too young. I wished so badly that I was but I had become one of the 5% of women facing breast cancer under the age of 40. My life was now spoken about in terms of statistics and I was blanketed with chemo and radiation to increase my chances of survival. Once treatment ended though, that sense of security was suddenly ripped away and I slipped into a dark place of fear and uncertainty of my future.

But then something happened. A woman I followed on social media posted about an event called the YSC Summit, a conference put on by the Young Survival Coalition (YSC) for young women diagnosed with breast cancer between the ages of 18 and 40 and their co-survivors. I was apprehensive to go as I didn’t know anyone but I thought what do I have to lose?

YSC in Oakland (2017), YSC in Orlando (2018)

I made the trip down to Oakland, California last year which ended up completely changing my life and turned things around for me. I was surrounded by hundreds of young women who were not only surviving but thriving, and I thought to myself if they can do it, then why couldn’t I?

As soon as I got back home, I saved my spot for the 2018 YSC Summit in Orlando, Florida and started making plans on attending. I was fortunate enough to qualify for a travel grant this year through the YSC which covered a significant portion of my travel costs allowing me to attend without the added financial burden (they also offer fee waiver applications which help cover the cost of the conference itself). When I arrived, I was met by hundreds of women and their co-survivors, some familiar faces from the year before and lots of new ones that I would soon get to know over the weekend.

The three-day conference was packed full of events from general sessions on nutrition and exercise to breakout sessions on confronting the fear of recurrence and building a family after cancer, to legacy retreats for women living with metastatic breast cancer. There were keynote speakers including surgical oncologist Dr. Lori Wilson who spoke about her own struggle with breast cancer and dozens of vendors providing breast cancer information and support.

While there were so many incredible takeaways from this event, these were some of the most valuable lessons I learned from this year’s YSC Summit:

A group of young survivors including CEO of the YSC, Jennifer Merschdorf
1. You are never alone.

Call it a sisterhood. Call it a community. Call it a tribe. No one gets it more than those who have been through it. They understand the emotional and physical effects of treatment on our bodies, the struggles with self-confidence after undergoing multiple surgeries, and the uncertainty of navigating life after cancer. From the moment you walk into the conference, you are a part of this huge family. No explanations needed, no judgments passed. Just this instant bond between people who get it.

2. It’s okay not to be okay.

We often hear those words “be positive” or “stay strong!” But at one of the breakout sessions on Living Fully After Cancer, guest speaker and psychotherapist Julie Larson reinforced what we all need to hear again sometimes, that we don’t need to be strong all the time. Some days are going to be crappy and others we may feel great. We just have to acknowledge how we’re feeling in each moment and accept that as it is.

3. Co-survivors need support too.

As much as we are struggling, our family, friends, and loved ones are too. They may feel helpless and afraid as they watch us go through countless treatments and surgeries and neglect to tend to their own needs. That is why the YSC provides breakout sessions for co-survivors ranging from topics such as mindful caregiving to being intimate after cancer, and how to show self-compassion. Because if you’re not taking care of yourself and having your own needs met, then how are you able to care for your loved ones?

4. Don’t be afraid to reach out for help.

I commend the YSC on providing one of the most valuable tools at the summit: free drop-in counseling sessions for both survivors and co-survivors. Coming to an event like this can stir up a lot of feelings and emotions. Remembering those we’ve lost and struggling with survivor’s guilt and the uncertainty about our own futures. Breast cancer is an emotional rollercoaster ride and being able to reach out for help to address some of these issues is really important.

And finally…

5. Everyone’s story is unique.

Although we are commonly bonded through breast cancer, our stories are all unique. From the differences in diagnosis, treatments, and surgeries we receive, to the way in which we process them is going to be very personal. Some people may find it therapeutic to share their stories while others want to keep more private and that’s okay. There is no right or wrong way through this. We just need to acknowledge our experiences as our own.

Me and Meghan Koziel, who inspired me to attend for the first time last year; Me getting up close and personal with one of the cute dogs at the breakout session on pet therapy.

 

The next YSC Summit is slotted to take place March 8-10, 2019 in Austin, Texas and I’m already excited about going back. The bonds that I’ve made and the information I’ve taken away from this incredible event is second to none. And to think I almost didn’t go that first year. Well let’s just say, I’m glad that stepped out of my comfort zone and took the plunge.


Kim Angell is a breast cancer survivor, advocate and blogger that is living and loving life on Vancouver Island, BC. Check out her blog at http://smilethroughthefog.com
Rethink is proud to republish the original blog posts of Leanne Coppen first featured by Chatelaine. Leanne passed away in 2011 from metastatic breast cancer and we are honoured that her friends and family have allowed us to share her words here on the Rethink blog.

There is a big storm here today – a blizzard.  The snow keeps coming down and piling up, traffic slides and crawls, and on the sidewalks people bend forward and stumble into the horizontal blast of a Canadian winter reminding everyone who’s boss.

I’m feeling a little like the cancer is showing me who’s boss today.  Not physically, but by virtue of it kicking the ass of my optimism.  The fear that the cancer might have spread to my bones or further colonized my lungs is coming down and piling up.  I’m trying to navigate it but I keep sliding and stumbling. I dread the CT scan tomorrow because I dread the results.

I’ve had a stormy day – torrents of tears, bolts of anger, clouds of despair.  A darkness of helplessness and a heaviness of frustration and a hail-storm of anxieties. You name it, it came crashing down. Luckily I had a session with my cancer shrink scheduled for today, but the best I could do was plow through a box of Kleenex asking, “Why can’t anyone stop it? Why can’t anyone fix it?” The pathetic futility of my questions only set me further adrift, and he had his work cut out for him just to bring me back to a basic acceptance of the anger and fear.

Of course, I know that the CT scan could possibly tell me that the cancer has stabilized, or even started to shrink.  After all, my neck lumps have disappeared.  (Is that a glimmer of sunlight I see?)

But like a Pavlovian dog, I’ve been conditioned to expect bad news each and every time they scan my body. Last time, even though my lymph nodes had stabilized, my lungs showed evidence of progression. (Nope, just more storm clouds.)

The coughing and the pain in my ribs make me even more fearful; maybe these are symptoms that the cancer has further spread.  Like walking out into a blizzard with nothing but a light jacket and city boots, my trusty tools Denial and Distraction aren’t offering me much protection in these conditions.

There are many hours in the day when I am functioning and managing as though everything is okay – or going to be.  But underneath is always a growing sense of foreboding. And also no small amount of anger that I have to feel this way – this afraid – again.

Yes, I know what this is: classic fear of the unknown. Thank-you Dr. Freud. But let’s not go so far as to say it’s “just” fear.  I am aware it’s not bad news yet and it may never be bad news, but that’s only my reason trying to wrestle with my emotion. Sometimes emotion wins.  This is one of those times.

I’m writing this while I’m still in the darkness.  I could have waited until I was in a brighter place, feeling less fragile, but what would be the point of that?

In a way, the act of sharing this fear does shrink it, if only a little. If I think about how many people might be out there reading this – how many different portions my fear might be divided into – it somehow feels a little better, a bit more manageable.

When I read the comments it’s like they take little chips out of the icy wall of fear, like they help take the cancer down a notch. Like I get a little bit bigger, just a little less vulnerable.

I don’t know what the name is for that unscientific phenomenon, I only know it’s true.  It’s a small shelter from the storm, but it’s a shelter nonetheless.

Living with metastatic breast cancer (MBC) can sometimes trick me into believing that my life is now essentially little more than a series of medical tests and treatments. It can feel like my identity begins and ends with cancer.

Before breast cancer, I was in graduate school and working towards a career as an equine veterinarian. I had goals. I have always thrived in the academic and career worlds—I like pressure, deadlines, working hard, and feeling accomplished.

When I started chemotherapy, I had to leave veterinary school. Even though I later went into remission, I knew that vet school would no longer work for me, so I worked hard to build a freelance medical writing and editing business instead. I felt fulfilled and proud of the business that I built. When I became stage 4, I scaled back my client load but continued to work, determined not to let go of this part of my life. When the cancer spread to my brain, my days in the work force officially ended.

I no longer have the energy to study or work. My days are now scheduled around doctors’ appointments, my weeks around infusions, my months around PET/CT scans. The word “terminal” is never far from my mind; I exist with an expected expiration date that makes long-term plans difficult at best. My primary goal is now to get through each day. My purpose in life is to survive.

In truth, I struggle with feeling fulfilled in such an existence.

Then I began to write about my experiences as a 25-year-old breast cancer patient. It started as a cathartic exercise and slowly turned into something more. I joined writing groups and built a website. I began to feel a sense of accomplishment through my writing that I had not felt since my pre-cancer life.

My writing took an exciting turn about a year and a half ago when I received an email from filmmaker and director Kerith Lemon proposing that we turn one of my short stories into a short film, bare. I enthusiastically agreed. We hoped to create something that would feel empowering for the breast cancer community, to show an honest slice of what it is like to have breast cancer at 25, and to bring some awareness to the issues surrounding metastatic breast cancer.

Bare tells the story of how three of my closest childhood friends helped me shave my head before my first chemotherapy infusion when I was first diagnosed with stage 3 breast cancer. My friends consoled me through my grief, hugged me when I cried, and helped me process the overwhelming fear that had pervaded every inch of my life since hearing the word “cancer”—fear about what would happen to me, how I would look, who I would become, if I would live at all.

In May, I had the opportunity to go to L.A. to watch the filming of bare. Part of me wanted to sob watching this scene from my life being acted out—but I didn’t want to be that girl sobbing on the film set, so I held back—part of me felt numb to it—it was all just so surreal—and part of me felt damn proud of myself. Proud that I had created something worthy of all these people coming together and working really hard to turn it into this beautiful film; proud of how far I have come since that day seven years ago when I wondered if I would ever feel beautiful again, if I would ever know what it meant to be loved by a man, if I’d have the strength to get through all that was to come. Proud that I found the strength, that I continue to find it every day, that even when I feel sick, I get up, push through, and have the experiences that mean everything.

In fact, I am more proud of this film than anything I ever worked on in school or in my freelance business. I believe that we have created something unique, beautiful, and powerful, and I accomplished my part of the project despite living with metastatic cancer, despite constant treatments, despite recovering from brain surgery and brain radiation.

Through bare, I rediscovered a facet of my identity that I thought I had lost amidst all the treatments and scans. It reminded me that my life is so much more than one medical intervention after another, that I am more than a cancer patient. I am a writer, a creator, a woman determined to continue living fully and purposefully.

Originally published in the MBC: YOUNG & STAGE IV, Vol 2, No 4 (Oct 2017) issue of Wildfire Magazine.

Bare was released in October, 2017 and can be viewed here. It was screened at the 9th Annual Lady Filmmakers Festival in Beverly Hills, California. Follow bare on Facebook, Twitter, and Instagram.


Rebecca Hall, co-writer of the short film bare, was diagnosed with stage 3 breast cancer when she was 25 years old, just after beginning veterinary school at U.C. Davis. At 29 years old, the cancer metastasized to her bones and distant lymph nodes. Despite her diagnosis, she continued to work as a freelance medical writer and editor, as well as starting her own outdoor yoga company, Santa Cruz Nature Yoga. Rebecca’s breast cancer returned again in November 2016 and spread to her brain. She underwent an emergency craniotomy, followed by brain radiation. Rebecca is now recovering and lives in Santa Cruz, CA with her husband and her dog, Harriet. Follow Rebecca on her blog, Cancer, you can suck it.

Name: Rebecca Hall

Age: 32

Occupation: Writer/Editor, Yoga Instructor, MBC Advocate

Age when diagnosed with breast cancer: 25 with stage 3 breast cancer, 29 with stage 4 metastatic breast cancer

Breast cancer type: Invasive Ductal Carcinoma; triple positive at stage 3; triple positive when first metastasized (to bones and lymph nodes); HER2+, ER-, PR- when spread to brain

Breast cancer stage: 4

Treatment: ongoing: herceptin & perjeta IV infusions (because I am HER2+), zoladex shots (to put me in menopause), xgeva shots (for my bones), femara daily pills (to mop up any remaining estrogen), avastin IV infusions (for brain radiation necrosis)

Tell us a fun fact about yourself that has nothing to do with cancer:

When I was 16, I competed in the World Equestrian Games for Great Britain (I was born in England).

What’s your go-to pick-me-up song?

It’s a little cheesy, but when I need an extra bit of oomph I put on the Fight Song by Rachel Platten. It’s my nieces’ (ages 4 and 7) favorite song, and we love to put it on and dance around the living room together. Whenever I listen to it, I picture doing that, and it makes me happy.

How did you discover your breast cancer?

I was laying on the floor on my stomach stretching one morning after a run, doing the same stretch that I had done the day before – done for years, actually – and it felt like I was laying on a golf ball. I felt my right breast and there was a lump. The Student Health Center nurse told me not to worry since I had zero family history of breast cancer and was only 25 (“25 year olds don’t get breast cancer”), but she sent me for a mammogram anyway, just in case. The mammogram was abnormal, so they biopsied it right then and there.

What went through your head when you received your diagnosis?

It sounds odd, but all I could focus on in that moment when they said I had cancer, was school. I was in a competitive graduate school program at the time, and I had worked really hard to get there. All I could think when they said those words was “But can I stay in school? How long will I have to step away from my studies to recover from surgery?” It’s not that I cared more about school than about dying or my family, certainly not, but I wasn’t ready to face the severity of my diagnosis yet. I couldn’t process that I might die or what having cancer would mean for me and my family. So, I focused on school instead. In time, I let the bigger, darker fears creep in, bit by bit.

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

Someone once told me that I caused my own cancer. She said that she had spent hours meditating on it, and she was now sure that I had given myself the disease. She thought it probably happened because I wasn’t happy enough (this was someone who barely knew me!).

Who or what is/was your biggest source of support throughout your experience with cancer?

When I was stage 3, my parents were by far my biggest source of support. When I realized that I could not, in fact, simultaneously go through a demanding graduate program and chemotherapy, I stepped out of school and moved back in with my parents. I didn’t know anyone in their town; all my friends and siblings lived far away. So for the majority of that year of chemo, surgeries, and radiation, it was just me and my parents. They drove me to appointments, cooked for me, cared for me, and put up with me when I was too scared, sad, or angry to be the gracious patient that I wanted to be. Now that I am stage 4, I am married to a wonderful, supportive, caring man, and he has become my main source of support.

What is/was the most difficult part of being a young woman with breast cancer?

For me, when I was stage 3, it was the social isolation. None of my friends had been through anything remotely close to what I was going through. They were still in a phase of life when they spent most of their free time going out and drinking. I couldn’t do those activities anymore, and even if I could, I was no longer interested. We couldn’t relate to each other anymore. Plus, because they were so young, they hadn’t yet developed the tools to cope with my diagnosis. They had no idea how to be there for me. Many of them just disappeared from my life because they felt so unprepared – which left me even more alone. A few were wonderful, but they were the minority. My family was great, but I also needed my friends. I needed people my own age to talk to about guys and dating and to joke around with. After going through my first diagnosis, I thankfully found a group of friends and a husband who do have the skills to cope with my situation, and they are the most supportive, loving, and empathetic people.

What’s something unexpected you learned about yourself as a result of having breast cancer?

I learned that I love writing, and that I’m good at it. Pre-cancer, I was a veterinary school student, but it became clear pretty quickly that vet school was no longer doable, even when I went into remission after my stage 3 treatment. Then a former professor offered to hire me to write his next book. The only problem was… I was not a writer. He convinced me that I could do it, so I gave it a go, and it went really well. Since then I have started my own writing and editing freelance business, and I have written and edited countless articles, book chapters, books, and blogs. Eventually I gained the confidence to do my own creative writing. I started my own blog about my experiences with cancer (Cancer, you can suck it), have had a few memoir-style articles published, and even co-wrote a short film, bare, about my experience shaving my head before my first chemo. I never would have attempted any of this had cancer not forced me to leave veterinary school.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

Feel everything that you need to feel, and remember that you don’t have to stay positive all the time. I felt an intense pressure to look on the bright side and remain upbeat throughout treatment. Because I could not, I felt like I was failing, and that only added to the enormous emotional burden that cancer dumped on me. No one wanted to hear how scared I was of dying, how profoundly sad I was, how angry I was. But in order to move through, and past, those feelings, I had to be given the space to feel them. They had to be given voice. So to any young woman recently diagnosed – it is ok to feel whatever it is that you are feeling. It will do you no good to suppress your feelings just to make other people comfortable. YOU are the priority, and your feelings are valid – whatever they may be!

Support throughout the cancer process is critical and I was extremely blessed in this department.

Family and Friends

From the moment I was diagnosed and shared the news, I was surrounded by love and support to an extent I’ve never know (or needed). I continue to be humbled by the number of people who truly cared about how I was doing and still care, several years later. Before my hysterectomy I was worried and asked mom, “What if nobody has prayers left for me?” My anesthetist for that surgery was an incredibly handsome angel – apparently, they do!
Prayers = answered. I chronicled my interaction with him. If you feel like laughing and swooning in equal measure, read Love in the OR at this link.

I knew that having a friend or family member with me at appointments and chemo would be necessary if I was going to make it through. After my first chemo, I was shocked by the immediacy of the symptoms. It hurt… bad. I told mom, “This is gonna kill me. I can’t do this seven more times. I’m gonna die.” She was so calm and steady when she replied, “You’re not going anywhere. You will not die.” I don’t know if deep down she doubted her words, but in that moment it was exactly what I needed to hear. I clung to her confidence and used it to battle my rising fear.

Even though chemo was brutal, I have many fond memories:

  • A friend sneaking a doughnut into my purse to celebrate finishing yet another blooddraw
  • Laughing during the many hours in the chemo chair (half of my chemo sessions were more than five hours… each!)
  • Watching the Flintstones with my grandmother while eating a cold cut sandwich, made just the same as when I was younger
  • Hearing stories of a little girl who prayed for me every single night and prayed to give my doctors strength, too
  • Getting Starbucks from my aunt at the best possible moments
  • Receiving tons of loving messages
  • All the hand holding (there was a lot)
  • Visits from fur friends, because who doesn’t love cuddling a Great Dane?
  Cuddling with Sadie, the Great Dane
Tim Hortons donuts

As with anything, balance is essential – it’s okay to say no if you don’t feel like seeing people on a particular day.

You aren’t obligated to receive guests and your loved ones wouldn’t want to impose either. For me, the weekends following chemo were “off” times and I would only allow family and close friends to visit. The pain was too much to handle and I decided to let go of the guilt. Being your authentic self is so important! And some days, your authentic self is exhausted, sore and needs space.

I think I summarized it best when a friend and I were cozy at my house after chemo. We were laughing about something as I braced myself for the nausea to set in and I turned to her and said, “You know – chemo and pain aside – this has been a really great day.”

The Medical Team

I know it sounds crazy, but I smile when I think about my medical team. Each one was a collaborative relationship that enhanced my knowledge of that step in the process. The warmth and support of both the staff and doctors was unexpected, but very welcome! To this day, I get hugs when I enter their offices for checkups.

The surgeon who performed my double mastectomy was also the doctor who told me I had cancer. Before my last appointment with him, I attempted to gather my thoughts so that I could express to him how much his expertise and positive demeanor meant to me. When the moment came I was overwhelmed. I teared up as he said he was proud of me and wished me “the best of everything good in this life.”  I shook his hand when I should have given him a hug. I’m thankful that it’s his kind face I see when I think back on the moment I was told the results of the biopsy that changed my life. I blogged about the visit, including a chance encounter with a woman waiting for her breast lump biopsy results. Read more at this link.

My plastic surgeon was also a perfect fit for me. We talked about such intimate things – breast size, texture, sex, femininity. We delved into the nitty gritty, but found humour in the most serious moments. I was in my surgical robes waiting to go in for my first mastectomy and reconstruction. It was the most terrified I’ve ever been in my life. (When I was on the operating table, I was shaking so hard that only my ankles, butt and shoulders touched the cold steel.) Before entering the operating room, she needed to do markups on my chest – where is the natural cleavage line? What kind of cleavage would I like? How high should the implant be? She said, “Okay let’s put an X on the left breast” (the one we were removing and replacing). I screamed out, “WAIT… unless X means ‘leave the breast alone.’” She froze and the small group of us stared wide eyed at each other. She replied, “Oh my god she could be right.” We all burst out laughing. Imagine mixing that up?! I can’t even.

The strongest connection I have is with my medical oncologist. I wasn’t exaggerating when I described chemo as brutal. Chemo, no matter the type, is poison. You poison your body over and over to shake up your cells and prevent cancer from forming in the future. In my case, I was young and thought that chemo wouldn’t be aggressive. It ended up the complete opposite – they went hard on me because I was young and they knew that I could take it. I couldn’t have made it through those seven treatments without my oncologist. He saw me at my lowest, most painful and horrible moments. There were appointments where I would try to negotiate ways around the pain (there weren’t any). There were days when I told him that my body couldn’t withstand many more rounds. I went to him with questions and topics for discussion and he always took the time to have an open dialogue. He never missed an opportunity to reassure or support me. I trusted him with my life – I still do – and that trust is what made all the difference. He made all the difference. The day I’m discharged from his care will be a very sad day indeed.

Support Yourself

Your health is just that – yours. Advocate for yourself! Ask questions and discuss the answers. Collaborating helps both doctors and patients alike. I detest pity – I refuse to give or receive it. Moments of doubt, fear, sadness, anger or regret? Sure. Pity? Never. To me, it’s a useless emotion.

Prior to beginning chemo, you must attend Chemotherapy Education.  If you think I tried getting out of it, you’re right.  I decided I wanted to attend on my own. Friends and family had been great about attending all my appointments, and I knew that I could handle this one solo. I walked in to the room and it was full of people – none of them near my age. As usual. I approached the woman with the clipboard and gave her my name. She replied by asking me who I was supporting. I gave her my name again and pointed to the chart. She asked me a second time who I was there to support. I said, myself, pointed to my name on the list and asked for my education package. I was irritated that she didn’t clue in sooner. Her face dropped and she handed over the file. I ended up sitting next to the only other person in the room who didn’t have anyone with them. She was a 50 something going through her second battle with cancer. We were a perfect, somewhat sarcastic, pair – she even took my question seriously when the topic of sex during chemo came up and I blurted out, “REALLY?!”

Having the support of friends, family and doctors is more helpful than words can describe. But perhaps even more important is showing up for yourself. Cancer patients or non-cancer patients – we all have moments in our lives where we’re forced to put up or shut up. Unfortunately, in the case of cancer patients, those moments are plentiful. I’ve felt my blood pour down my back and the intense sting of my skin being cauterized. I’ve tasted chemo and had a drain pulled from my body that was longer than my forearm. I’ve been on a surgical table alone and cold more times than I ever thought possible.

Was I in pain? Did I cry? Was I angry, resentful and terrified? Yes to all. But I showed up.

The point isn’t how deep you dig to find your strength, it’s that you dig at all that counts.

During chemo and the surgeries, supporting myself came mostly in the form of managing physical pain and making extremely difficult decisions. Now, self-care comes in the form of psychotherapy. After quite a bit of searching, I found a therapist who I click wonderfully with and my biweekly appointments with her have become a beautiful part of my self-love routine. She guides, reassures and teaches me even more ways to support myself.  #progress


Cassandra Umbriaco is a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

Name: Cassandra

Age: 32

Occupation: Communications Specialist

Age when diagnosed with breast cancer: 28

Breast cancer type: Triple Negative, BRCA 1

Breast cancer stage: 2

Treatment: Mastectomy and chemotherapy

Tell us a fun fact about yourself that has nothing to do with cancer.

I’m an unapologetic Disney nerd!  I’ve been to Disney World nearly 20 times, I own way too many Minnie ears (a must-have accessory when park hopping) and I considered making a Disney song the answer to the next question.

What’s your go-to pick-me-up song?

I don’t really have a go-to pick-me-up song.  I love all genres of music – anything with a catchy beat!

How did you discover your breast cancer?

My annual physical was coming up and I didn’t want to go – I felt healthy and didn’t see the need for a checkup.  I remember calling my family doctor’s office and saying, “So you’re just going to do a breast exam?”  Just a breast exam.

During the appointment, my doctor checked the right breast and there were no issues.  She moved to my left breast and her expression became serious immediately.  She said, “You don’t feel that?”  I had no idea what she was talking about.  She informed me that I had a very large lump in my left breast.

From there, everything moved quickly.  My family doctor and the doctor who later performed my biopsy (and double mastectomy) took my case very seriously and never brushed off urgency because I was so young.  The crazy thing was that my lump didn’t fit the usual description of a breast cancer lump.  I was calm and collected throughout the process because I was sure it wasn’t cancer.  I was so young.  It wasn’t possible.  Except it was.

What went through your head when you received your diagnosis?

I immediately said to the doctor, “But I’m only 28?”  I’m sure it sounded more like a question than a statement.  It was an out of body experience.  I was stunned.  I could hear my mom crying beside me and I thought, this can’t be.  How can this be?  Minutes later, when I came out of the initial haze, my first thought was, I don’t want to die.  My second thought was, I hate needles – how the hell am I going to get through this?

What’s the craziest thing someone said to you after being diagnosed with breast cancer?

I received a couple of questions and comments soon after surgery related to “enjoying” my new implant.  Even thinking back on those conversations makes me angry.  I want people to know that there is nothing enjoyable about a mastectomy.  Those of us who’ve had to go through it didn’t get a breast augmentation – we had our breasts removed and replaced (in reconstruction cases).  Awareness and sensitivity around that is very important to me and I don’t want other women to have to face similar comments.

In general, I wish people knew that sometimes the best thing to say is nothing at all.

Who or what is/was your biggest source of support throughout your experience with cancer?

Without a doubt, my family and friends.  Here’s an excerpt from a blog a wrote that sums it up:

November 11, 2016: 11.12.13. Hands down one of the worst days of my life.  Even still, I hate the feeling of leaves falling on me because they were falling in abundance as I walked into the doctor’s office for my biopsy results.

There are many words I could choose to focus on when thinking about this day – terror, sadness, anger, grief, shock.  Those words still cross my mind. But the one I decide to focus on – love.

(After my first mastectomy + reconstruction on November 27, 2013) I was being wheeled out of recovery and my family saw me and along they came (even though they weren’t immediately allowed to come with me).  Mom, Dad, Nonnie, Aunt Angie, Aunt Mary and Rusty – all in a row.  I was so drugged up and in serious pain, I could hardly move or open my eyes.  But I could hear them asking the nurses questions and calling my name.  I wasn’t able to show it, but I was cracking up.  What a hilarious group they made – slightly angering the nurses with their questions and comments that came in quick succession.  “How’s she doing?”  “Cassandra?”  “Sweetie, can you hear me?”  “Where is she going now?” “Is she okay?”  “Can we go with her?”  “When can we see her?”  “Cassandra?”

As I was wheeled down the hall, I thought – my God, I love these people.  They would follow me anywhere just so I wouldn’t be alone.  To make sure I knew that I was loved and safe.  And to make me laugh.

That kind of love has serious, life-altering power.  I was filled to the brim with it.  I inhaled it, held my breath and kept it there until April 11, 2014 – my last chemo.  For that long, brutal winter that love helped me survive.  I think it still does.

What is/was the most difficult part of being a young woman with breast cancer?

From the moment you’re diagnosed, it’s a rollercoaster.  You are bombarded with appointments and questions and fear and pain.  Your mind is on overdrive and so are your emotions.

Throughout treatment, I couldn’t find my niche.  I didn’t want anything to do with pink ribbons.  Traditional places for support didn’t appeal to me.  I wasn’t able to identify with any other cancer patients, in part because they weren’t (near) my age and also because I couldn’t see through the clutter of chemo to even want to seek out people like me.

Having a double mastectomy, chemotherapy and a hysterectomy within two years took its toll.  I often struggled when in a room with other “normal” young women who hadn’t gone through the many trials of breast cancer.  I felt deformed and questioned my worth.  But time has helped to heal those wounds.

What’s something unexpected you learned about yourself as a result of having breast cancer?

I knew I was tough, but I didn’t know I was this tough.  My capacity to handle physical pain is much more than I would have ever thought possible.

Having breast cancer also heightened what I already thought about beauty – that it’s so much more than our appearance and can be found in the darkest of times.

For instance, losing my hair was difficult.  To have some control over the loss, I shaved my head the night before my first chemo treatment.  A close friend came over to shave it and we expected there to be tears – it broke my heart to chop my long, luscious locks.  Slowly but surely the strands fell until only a buzz cut remained.  Mom was there, of course, and we chatted and laughed throughout the process and ended with a champagne toast.  I was terrified (with chemo looming), but I felt incredibly loved and supported.  And when I looked in the mirror at my new ‘do,’ I felt truly beautiful.

In one sentence, what words of wisdom would you pass on to another young woman who has just been diagnosed with breast cancer?

In this case, it’s difficult to limit words of wisdom to one sentence.  I would want to tell her that I know she’s the most terrified she’s been in her life.  That I know she’s wondering why this happened to her at this age.  That in no way is this fair or okay.  I would tell her to get ready for battle because that’s what this is – an all-out war.

But I would also tell her that she’s so very strong – much stronger than she realizes.  I have no doubt that she can do this.

There is a saying that I love and live by.  It’s simple, but encompasses so much.  My one sentence would be…

Have courage and be kind.


I was in remission for four years after my stage 2 diagnosis and then, nine days before our wedding, I found out the cancer was back and it was metastatic.

I was lucky enough to get signed up for a clinical trial that has kept me stable for the last 21 months. The clinical trial starves my cancer of estrogen of which my particular breast cancer ‘feeds’ off. The active drug has just been approved by the FDA in the States as a first line of defense for advanced breast cancer. As my husband says ‘you helped make that happen.’ It’s a pretty great feeling.

Less than six months after my stage 4 diagnosis, my brother and his girlfriend nominated me to be the Toronto Blue Jays Honourary Bat Girl. To qualify, you had to have ‘gone to bat against breast cancer’ and be a Toronto Blue Jays fan; I qualified. I didnt win but the woman who did, a fellow Rethink Breast Cancer advocate, Michelle Riccio, also had stage 4 breast cancer and so I was thrilled that young women were getting exposure regardless of if I won or not. The crowd was seeing a face that didn’t resemble our grandmothers’.

This year, my husband Keith nominated me. Thanks to the people who surround me and love and support me – I like to refer to them as ‘Team Katie’ – I won. I was this year’s Toronto Blue Jays Honourary Bat Girl.

When MLB called from New York City to tell me that I won, I couldn’t contain my emotions. I cried for most of the conversation. So many of my days are spent at the hospital, attending appointments, having procedures, or on the phone with doctors. Knowing that I got to be part of the Toronto Blue Jays organization, if even in an honourary role, was pretty astounding.

We all know what the pink ribbon represents but very few women under the age of 50 think it applies to them.

I tell women, if your doctor says you’re too young to have breast cancer, tell her about me.

Being diagnosed at 26, more than half the age of the average, presents different challenges, including financial burdens (I had just graduated university with 3 degrees and had student loans), I hadn’t made a name for myself in the work world, and cancer robbed us of having children. Needless to say, it presents different isolating issues than women diagnosed in their 50s, 60s, and 70s.

This contest made the isolation, that I as a young woman experience, such a miniscule part of my day as complete strangers were messaging me, supporting me, and sharing their own stories related to cancer. It was empowering.

I was recognized on the Rogers Center field and my story was told to thousands sitting in their seats about to watch the Jays take on the Seattle Mariners. I was presented with flowers by Jays pitcher Marco Estrada, given an MLB jersey, watched the game with my family from a suite and have memories that will last a lifetime.

After the game, about 30 of us headed over to the Amsterdam Brewhouse for dinner and drinks to celebrate the big day. I had emailed them a few weeks before, explaining the day’s events and asking if they could accommodate our large group. They emailed back explaining how they would love to host and just like that we had a place to convene after the big game.

What I didn’t know was that while I was preparing for the game, Amsterdam Brewhouse was doing some homework on me.

As Keith and I walked into the restaurant, and as my family and friends rose to their feet to clap and cheer, I noticed all of the servers had pink ribbons pinned to their uniforms. I gave some hugs, had some quick conversations and sat down across from my mom at the end of the table.

Not long after ordering some water, one of the restaurant managers came over to introduce himself. He started by telling our table that the pink ribbons that I had seen were in honour of me. The restaurant had seen some of the advocacy work that I had done and referred to me as an inspiration. He continued by saying that the pink ribbons were meant to help spread awareness to their customers about the disease and young women with breast cancer. This is when my mom’s tears started falling. He also said that the staff at the Amsterdam Brewhouse were donating money throughout the night and once they had collected everyone’s donations, the organization of my choosing would receive the funds in my name. I hopped up from my chair and hugged the manager and thanked him profusely. What a generous act of kindness and thoughtfulness.

At the end of the night, I asked for my bill for my husband and I. It was brought over minutes later with a note that read:

‘This one is on us. Thank you for coming in and being so amazing.’ The balance was $0.00.

Just to clarify, Amsterdam Brewhouse was a place I had never been before, it was chosen based on its reviews, being harbourfront and its proximity to the Rogers Center and its size, which could accommodate our large group. I wasn’t an employee’s sister or a past server. I didn’t know anyone there nor had I ever stepped through their doors. They did this essentially for a stranger.

Yesterday, Amsterdam Brewhouse donated $221 in my name to Rethink Breast Cancer who without question is my organization of choice.

I can’t thank Amsterdam Brewhouse and Rethink Breast Cancer enough for making me feel special, loved and supported through my continued breast cancer experience.

 

– Katie Davidson